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Sunday, October 13, 2013

soooooo tired...

This week, we were coming home from a doctor's appointment on the wheelchair transport, when the driver asks me, "Is he OK?" (meaning Bob) and I turn to see Bob sort of leaning to the side of his wheelchair, his left hip raised off the seat. And I think, oh shit, and I mean that quite literally because that is what he was doing, right there, in his wheelchair, in the back of this transport van and we still had 20 miles to go before we got home.

We get home and, you know, it is nearly impossible to change a diaper in a wheelchair, so I tell Bob that I will get him into bed and then change it. So poor Bob has to slideboard onto the bed, meaning there is going to be an even bigger mess in his pants, but I get him onto the bed and get a washable bed pad under him and when I cut off his Depends, there's nothing there. I am thinking huh? and then I realize there is a rock hard stool stuck half-in and half-out, so I have to pluck that thing out, plus dig out some more and give him a suppository because there's still stuff stuck up there, then spend the night cleaning up diarrhea squirts.

And I tell you, I am getting sooooo tired of all of this.

The next day, we have a "day off" meaning no appointments to go to, and Bob is still complaining of constipation, so I give him a laxative and that afternoon, boom, it hits him and now I've got a bucket of diarrhea that soaked right through the Depends into his shorts and onto the bed pad. And while pulling off his shorts, that stuff is getting all over his legs and my arms and everywhere. Then I spend the rest of the afternoon cleaning up this stuff and doing an extra load of laundry.

And really, I am getting so tired. Sooooo very very tired. I wake up tired. I walk around all day feeling tired. My legs ache, all the way to the bone. In fact, I think my bones are even aching. And I've taken to setting the feeding pump rate a little lower at night so that it's done at 7:00 a.m. instead of 6:00 a.m. and I can grab an extra hour of sleep in the morning, and I still am tired, and of course that puts me off schedule for the whole day.

Yesterday was Saturday, so another "day off", and I go into my office in the morning, thinking I might blog, though I'm so tired I haven't a clue what to blog about, and I find that one of the cats has vomited all over my desk. I mean, it was everywhere, down the front of my computer printer and splattered all the way across my desk top and heck, it even got into my little desk top electric fan and I had to clean that out with a Q-tip. So I'm cleaning up all this cat puke and I look up, into Bob's room, and there's water on the floor under Bob's bed and I'm thinking what? So I go out to check, and here the darn catheter bag as sprung a leak and it's not water, it's urine. So now I'm not only cleaning up puke, but also pee....

I tell you, I am sooooooo very tired. It doesn't help that this is shaking down to be one of those months with about six billion doctor's appointments crammed onto the calendar.

I've been taking care of Bob and everything else, all by myself, for nearly three years now, without a break, without a vacation, without even a day off, and I am really, really, very tired.

A year ago, someone asked me what I would do if I had the whole day to myself. A full 24 hours to do anything I wanted. And I told them I would spend the whole day in bed. That was a year ago. And right now, I could do with a whole week in bed... maybe two.

I am seriously considering asking Bob's primary care doctor if there is a way we can admit Bob into the skilled nursing unit over at the charity hospital for a few weeks. They have PT/ST/OT over there. He could get started back on therapy. But I'm not sure if the insurance will approve it, or the doctor will order it, or Bob will even want to do it. I'm not sure if financial aid will pay for the co-pay, and that would be the only way we could afford it. But jeepers, I really, really need a break and just let someone else take care of him for awhile. Of course, this would have to happen after Bob's blasted foot heals up from the surgery. Because first, he will need to be able to put weight on that foot, then it would be great for him to start doing some sort of exercise/therapy. With the exception of the home PT who stretches his neck, he hasn't had any real PT since early last spring. And I tell you, his legs are just wasting way. I am thinking, we could start him on inpatient therapy and move to home health therapy and then to outpatient rehab. He would be starting over, from square one, but truth be told, he needs it. This foot/dystonia thing has really taken a toll on him.

Then, again, I worry that if I put him a hospital, will he just come down with infection after infection? Or come down with pneumonia. And will the nurses screw up his meds? Or worse? Because after what we've been through, I have a hard time trusting hospital staff to do their jobs.

So right now, it's just an idea...

And tomorrow, I have to get up at 5:00 a.m. because we have to make a 10:30 transport for another doctor's appointment plus the blood draw guy is due at 8:30 then the home health nurse has to do a re-eval after 3:00 p.m. for his feeding tube replacement--- and jeepers!

You need a break in such a bad way. You're not any good to Bob or yourself if you completely burn out. I hope you can get some skilled nursing assistance at home, or get Bob scheduled for some in-patient therapy.

If there's anyone who can find the resources to distribute some of the work, it's you. You're a caregiving rockstar.

Diane,You need a break before you end up like me. Arrange with the doctor to have Bob admitted to the hospital for 3 days. Upon his release have him admitted to a skilled nursing facility. Medicare will pay 100% for the first 20 days. You do not have to leave him there that long, but use the time as respite care.

Even if it is for a week or two, it will allow you to remember what it's like to be human again.

Jo, that would cost $195/day for the hospital stay and under Bob's Medicare Advantage plan, he pays 100% nursing facility costs for the first 90 days! Then the insurance pays 100%. So, yikes, too, too expensive. That's why I'm thinking about the skilled nursing unit at the charity hospital where he qualifies for financial aid...

Diane, there are risks in a institutional setting, but there are risks at home, too. He's bed-bound and you're completely burnt out--please try to get him admitted so that both of you can have a change of pace. I wish I could do more to help.

I know all too well the kind of tired you are talking about. Our daughter just left after giving me a 10 day break from the 24 /7 total care thing. I feel soooo much better. Diane, I highly recommend taking a break. Besides helping yourself , you will be an even better caregiver after some real rest. So, my advice do what it takes to take a break. Good luck :)Joyce

Welcome To Our Pink House

About Me

Bob and I were married 09/16/94. He is my soulmate, the love of my life. Bob is an artist and I am a writer.
On 10/20/10, Bob, following his doctor's advice, underwent a carotid endarterectomy. When I left him in ICU that night, he was fine and I thought in good hands. Two hours after my departure, a nurse noted on his chart that Bob's speech was slurred and his right arm was paralyzed. The nurse did not call a doctor. Later that night, the nurse noted that Bob could not move his right arm or leg, still a doctor was not called. The next morning, the nurse noted that he was paralyzed on the right side, a "12" on the Glasgow Coma Scale, disoriented and confused, but no doctor was informed. I arrived at 9:00 a.m. and immediately called for the doctor. He was rushed to surgery. It was 12 hours too late. The CAT scan showed 2/3 of his brain had been damaged. I was told he would not survive. Somehow, he did.
Bob was discharged from the hospital on 12/31/10 and, although the hospital wanted him sent to a nursing home, I brought him home instead. This is the story of our journey since that day. This is also a love story.
(Bob passed away 5/28/15 and I am trying to survive....)